Tag Archives: hospice

My ten day allocations of living shrunk last week when my team of doctors decided that I was no longer eligible for chemotherapy. Chemotherapy being my only active tool to contain my cancer which seems to be invading more and more of my body. I entered in-home hospice Friday.

I have yet to sing the praises of hospice. The main difference is that I am at home (nice) and that Mike is now a deputized nurse (not so nice.)

I don’t feel good. It hurts to talk (ng tube goes down my throat to extract fluids from my stomach into a cute little bucket.) I have received no actual nutrition since i entered the hospital. Nothing can stay in my stomach with out me throwing up. And nothing can go beyond my stomach. There is no detente in site.

I wont pretend to keep blogging much. I think the above sums up my trajectory. I will soon die. I am not scared but I am truly sad.

Thank you for finding this blog, passing it on. Perhaps it will have a future in another’s hands.

I am not encouraging visitors. I find this a time for quiet reflection.

Much love to all and most especially my care team that formed the night of my diagnosis and has stood by me through it all. And my beloved partner, always – Mike Edera.

There is a vague line between refusing to greet death and strategically delaying death. In this short essay that arrived in my inbox today, an oncologist calls out useless delaying tactics for stage iv patients. She summarizes, “Multiple lines of therapy in stage IV solid tumors have diminishing benefit, and this is where patients and families need to know that the finish line is the same. You can take the expensive, toxic obstacle course or you can take the easier, cheaper, nontoxic route with excellent hospice care.”

In my little mind, I decide that by bartering my body to move intriguing science forward I am not just a societal burden. I am paying my way. Kindof.

Today is the birthday of the great, late Martin Luther King, jr. I am used to paying my way in more overt ways that rally others and myself to live inclusively and fairly – to exemplify MLK’s description of beloved community where no one is left untended or in need by policy or neglect.

Today, instead, I hobble with the dog around the block. I hurt. I have hurt for weeks now. I replaced the illness of chemotherapy toxicity with the pain of presumed cancer growth rearranging my torso. There is no escape as each step hurts. Seated I hurt. I am not the builder of MLK’s dream; at best I am the recipient.

I am eager for the HEATT trial to start. I count down in hours knowing that each day off treatment is a burden just as each day on treatment ended up a burden. Weeks like these make me throb with the stupidity of trying to outlive my disease.

The exits are not well marked with terminal illness.

There are dozens of things left for me to try. But when is trying itself wrong.

Some periods of time are too dense with experiences to narrate. Add in the sharpness of the struggles, their lack of resolution, a heat wave, a chemo cocktail designed to knock you on your ass and a bit of silence might ensue. My focus is on putting one step in front of the other. Surviving.

The good news is we are surviving right now and still imagine August as a calmer month. Perhaps I will have vignettes to share then. I pack for my third trip to NYC since June 21st. This trip I do solo, despite my husband’s protests. With an uncertain travel future looming and mounting costs, I need to know that I can make whatever path I follow sustainable.

The last trip really felt vacation like even if we never got much beyond the infusion suite.

This trip will be down and dirty. I will be late to arrive, early to leave, just getting in my 29 hours of infusion time. Turned away at the deluxe, free cancer housing in midtown Manhattan with a terrace to delight

and a waiting list to match, I got adopted by an old colleague in West Harlem – a touching kindness and a treasured connection to my non-cancer life.

In lieu of truly filling you in on the now, I offer a brilliant short piece written by my first cancer pal, Bev. She has offered me solace as I learned to live with terminal cancer. This week she entered hospice. She will leave this world with a bit of my heart. Enjoy Mystery Bag, a little peak at living with cancer.

Mystery Bagby Bev Lipsitz

I was in a writing group for women with cancer. One day, the facilitator brought in a bunch of paper bags. She told us to pass them around and without looking, feel inside each bag.

Then she gave us each our own bag, and told us to reach inside, and still without looking, write about what we found.

When I felt inside all the bags, there was only one item I could identify. It felt like a swizzle stick. I thought I might write a story about a wonderful vacation in Hawaii.

But I got a different bag, with something I couldn’t identify by feel. Hmmm, what to do next…

Let’s try a CT-Scan. Fill the bag with contrast. Lay it down and slide it in and out of a machine that looks like a giant donut.

Click, click. Breathe. Hold it. Breathe. Hold it. Click, click.

Sorry bag, the pictures show that it’s cancer.

Oh no! Now what do we do?

Surgery! Slice the bag down the middle. Take the damn thing out. When you’re done, staple the bag back together.

Oh this thing is ugly. Can we learn anything more about it? Sure…Slice it up. Send samples to the lab. The report comes back: its OVARIAN cancer. OH NO, everyone says that’s a bad one!!!!

Did we get the whole thing out? Leave any pieces inside? What if there are some crumbs that didn’t get out? How do we get rid of those?

Chemotherapy! That should take care of it. Pour some poison in the bag. What’s that? The poison burned a hole in the bottom. Anybody got any tape?

Oh by the way, even if this works for now, this cancer could come back. We might have to do this all over again…and again…and again…

This bag is a mess. I wish I had gotten a different one, maybe one with some candy in it, or a brownie.

You know what, though? This bag is stronger than I thought. Even with the cancer, and the poison, and the staples and tape, this bag can carry a lot of stuff. Don’t worry, bag. If that thing gets too heavy for you, we’ll bring in reinforcements. Wrap you in a blanket. Make you comfy cozy. Sit with you. Don’t be afraid.